Potential for big data through the PCEHR

“This is the end of the beginning,” Department of Health and Ageing deputy secretary Paul Madden told the Big Data 2013 conference in Melbourne during an update on the implementation of the PCEHR.

Mr Madden, also DoHA's chief information and knowledge officer, was in a buoyant mood and excited about the possibilities of large amounts of clinical data coming through the pipeline.

“I don’t want to get too cute on the ‘big data’, the ‘huge data’, the ‘humongous data’, or the ‘über-data’ – but we’ve got a hell of a lot of data,” Mr Madden said.

Statistics show that every year, the average Australian has 22 health interactions – four GP visits, 12 pharmacy prescriptions, three visits to a specialist, two to allied health practitioners, and one to a dentist. Mr Madden said the PCEHR would build the data and “join up the boxes”.

He said there were now 109,000 people with a PCEHR, creating a pool of 1.4 million MBS records, 2.9 million PBS records, 16,600 immunisation register records for children under the age of seven, and 23,000 organ-donor records.

Nearly 5000 organisations and 2000 health professionals are now authorised to use the system, and over 90 per cent of GPs have access to PCEHR-enabled software.

While only two hospitals are currently able to upload discharge summaries to the PCEHR, he said he expected many more to come online by the middle of the year.

“The ability for a health carer to know that information, and, as we go forward from here, to amass discharge summaries – including discharge medications – shared health summaries, event summaries, new referrals, will change the game,” Mr Madden said.

Past work at Treasury and the ATO gave Mr Madden a good understanding of the thorny issue of privacy.

“I don’t see privacy as a blocker; I see privacy as a tool,” he said. “We do need to provide the privacy and the safeguards and the security to maintain the trust [but] we shouldn’t let privacy and security rule our lives.

“In my previous job I had a real challenge where security guidelines said you need to make sure that any system that people could access, either for business or as a personal system, [you] are able to secure those completely and nobody else can access them.

“The way we do that as bureaucrats is we make the thing so hard that nobody can access it, even the person who owns the damn thing!”

Mr Madden said the right balance was to make the PCEHR inaccessible to those who shouldn’t see it, and accessible “24/7” to the record’s owner or carer.

Mr Madden said DoHA is now doing work on medication management, continuous improvement and the quality use of medicines in the PCEHR, and that it would generate valuable data on dispensing and the use of controlled drugs.

Different departments are also working together to create uniform data-management guidelines, with draft ethics guidelines on access to PCEHR data for researchers expected to be completed in the second half of this year, he said.